Caregiving Corner

Released August 1, 2021

One struggle that many caregivers have is that medical professionals don’t listen to them. This problem can occur often for families with a rare disease. It is important for caregivers to advocate for their loved one and for themselves – even though this can be a draining process.

Here are some important things to consider:

  • Don’t give up
  • Keep asking questions
  • Find someone who will listen
  • Try to build a multi-disciplinary team of physicians, therapists, support workers, nurses, social workers etc.
  • Work to develop a care team that communicates with each other
  • Ask providers for help when your insurance denies claims
  • Learn as much as you can about MWS and other conditions that your loved one has
  • Try to find a Superstar Primary Care Provider that can act as your “Quarterback” and help you get the support of other medical professionals
  • Be your own advocate – as a caregiver, you have needs too and you should be well supported
  • Connect with others – you are not alone. There are MWS Facebook groups for support
  • Focus on what you CAN do


AARP provides some suggestions for when doctors don’t listen:

  • Try to develop a partnership with the medical professional
  • Be prepared at visits and have questions written down
  • Get information about all the options
  • Take time to think before dismissing advice


The Society to Improve Diagnosis in Medicine (SIDM) provides the following advice:

  • If your loved one has symptoms that are ignored, ask yourself “What might this be?” And then ask, “What do I do if these symptoms get worse?” These questions might help the doctor to stop and consider the options. You may also want to ask, “What else might this be?” Your loved may have multiple medical issues or conditions that need to be investigated independently.
  • Try to find a medical practice you can trust. Healthcare professionals may have only a little time schedule for each patient, but that doesn’t mean they shouldn’t have time to listen to your concerns and goals. If you feel that your doctor is consistently ignoring you, find another practice.
  • If you feel the physician doesn’t take your loved one’s symptoms seriously, ask for a referral to a specialist or get a second opinion. It may be good to get a fresh perspective
  • Learn how to present your symptoms factually, clearly, quickly, and without unnecessary details. Sometimes symptoms aren’t ignored by the doctor, they’re just lost in a list that’s too long or includes what the clinician feels are irrelevant details. Ask the medical professional how you can best present the information.
  • Learn about the types of screenings that should be performed routinely for MWS patients. If they refuse to do the relevant routine screenings, seek another medical practice that is more conscientious and aware of the medical concerns related to MWS.
  • Speak up. Be willing to stand up for the rights of your loved one.
  • While it is important to learn about symptoms from reliable sources, doing so doesn’t mean demanding specific tests or treatments for some rare disorder you haven’t been diagnosed with. Ask for help politely yet firmly.

Trust is a vital part of the healthcare journey and it is worth it to invest the time and effort to build an effective healthcare team that you trust!